Special needs parenting changes us entirely
According to 2019 statistics, over three million children (4.3% of the under-18 population) have a disability. These disabilities may include seeing, hearing, concentrating or remembering, walking or climbing stairs, dressing or bathing, or simply running errands. Down syndrome children continue to be the most common chromosomal disorder in the United States affecting as many as a million children. These children have many special needs, and thankfully our society has done much to help them have a better and longer life. However, most special needs children have to have special learning classes and several kinds of continuous therapy.
Most of the special needs attention has been focused almost entirely upon the children themselves, which is notable, but what about the people who provide care for these children? For the most part, these are loving parents who also are faced with special needs — e.g. not only providing a safe home and environment for the children, but also with juggling employment and scheduling far more than regular parents.
Recently, our daughter, the mother of a Down syndrome child, shared an article written anonymously about what someone caring for a special needs child goes through. It touched our daughter’s heart, and I suspect will also touch the hearts of anyone caring for a special needs child. Let me share some of the details of the article with you. It is addressed to parents.
“Special needs parenting changes us entirely. There is no denying this. Because the truth is the first few years are going to pull you so far away from who you used to be that you won’t even recognize yourself anymore. You’ll find yourself looking in a mirror, with bags under your eyes, either heavier, or skinnier, and not recognize yourself. It looks and feels like you’ve aged a hundred years. Or, maybe you are standing in a crowded room, feeling entirely isolated and alone, and wonder if you are invisible. You wonder how your world can be so different, and how you should now relate to others.
“It will challenge everything you know. You will question yourself, your purpose, your strength; and you will wonder why, and how, and why my child, and not theirs. It will challenge your marriage, your health, the way you parent your other children, your decision on whether to have other children, your career and finances, your relationships with others and even with God.
“You will experience the greatest love on this earth, and simultaneously wonder how it can be so hard all the time. You’ll get shamed for being sad, and for missing some of the possibilities that normally occur. You’ll see the unbelievable beauty that this world holds, almost like you’ve been granted membership in a special club, one full of hugs, smiles, and milestones along the way. You’ll also see unbelievable cruelty, and it will take your breath away when it happens. You think you’ll be prepared with that special snappy comeback, but only you won’t be able to respond. You will try to shield your child from evil and then spend the next few nights sleepless wondering how you can live forever and change the world at the same time.
“You’ll have days where you swear you can’t do it anymore, where you are certain it will never get any easier, that it is going on forever. And then, you’ll have the most unbelievable moments that make everything worthwhile. Your child will shatter a goal, a milestone, something you have worked on for years, and you suddenly know it’s going to be okay. You will live and breathe hope and acceptance, and kindness; and you will be sewn together with strength and determination.
“Yes, special needs parenting changes everything. It turns you inside out and upside down. But here is the secret that you have to learn on your own: It also puts you back together as the person you were meant to be.”
Although written by an anonymous person, it is obvious that the author
lived with a special needs child in order to understand these feelings. I am grateful for her sharing, and offer up a special prayer for all of the parents who go way beyond the second mile to be good parents to children who indeed have needs not caused by anything they have done, and for parents who are also special because God has given them a caring and loving attitude far beyond what is normal.
Robert Box has been a law enforcement chaplain for 30 years. He is a master-level chaplain with the International Conference of Police Chaplains and is an endorsed chaplain with the American Baptist Churches USA. He also currently serves as a deputy sheriff chaplain for the Benton County Sheriff’s Office. Opinions expressed are those of the author and not the agencies he serves.